ARFID: Educating our peers and healthcare providers

June 12, 2020

I never thought I would be making a post about the importance of advocating for your mental health when it comes to speaking to a health professional, but here it goes. Hi, my name is Cassie and I have an eating disorder. It is a lesser known eating disorder at that; it’s called, Avoidant Restrictive Food Intake Disorder or A.R.F.I.D.

People with mental health disorders have been widely mistreated over our history and even that is a blaring understatement. Whether the mistreatment comes from prejudice or an innocent lack of knowledge, those encounters can be extremely painful and triggering. I am the kind of person who likes to give people the benefit of the doubt. Call me naive or inexperienced but I believe that most people wake up and want to spread light in this world, especially now. If we build on that premise along with my personal life experience, we can assume that the mistreatment of others is coming from a lack of understanding about how mental health disorders affect our peers. Even though more people are speaking out about mental health, there is still a lot of stigma when it comes to eating disorders.

When I tell someone I have an eating disorder, most of the time the same image pops into their head; and I know, because they have told me. Let me preface this by saying this is what you DON’T say to someone who struggles with an eating disorder or any type of mental health disorder for that matter. The most common statement I hear from people is, “You don’t look like you have an eating disorder.” The image that they describe to me next is not always said in the kindest way. In plain terms they almost always describe the individual as a very thin, white, female. Here is a hint for you, eating disorders are just like any other mental health disorder; anyone can have them and they do not discriminate. The most commonly known eating disorders are Anorexia Nervosa and Bulimia Nervosa. Most people look at me funny when I tell them I have ARFID and in fact, the DSM currently identifies 9 types of eating disorders; one of which is called, Unspecified Feeding or Eating Disorder (UFED) which applies to those whose behaviors don’t fully fit into the currently identified diagnoses. Eating disorders come in all shapes, sizes, colors and genders but it is always consistent its vicious determination to make us believe we have to sacrifice the nourishment of our bodies for any price.

Until a few weeks ago I didn’t fully realize that not only do most Americans not know the above information, but most health practitioners don’t either. I never thought I would spend the first 5 to 10 minutes of every encounter I had with a health professional explaining what ARFID was; let alone what an individual displaying eating disorder behavior looked like outside of the phrase, “just not eating enough.” Unfortunately, considering that my specific diagnosis wasn’t recognized in the DSM-5 until 2013, none of the doctors I saw growing up had even suspected an eating disorder even though I have struggled with this for over 20 years.

I am not here to place blame and point fingers.

Let’s be honest, it is not their fault that the term “eating disorder” didn’t ever come into the conversation with my parents or me when we were discussing my health. I didn’t meet any of the current criteria of an eating disorder. Like I mentioned earlier, to them I didn’t “LOOK” like I had an eating disorder… or at least my restricted diet didn’t put me in any real danger… or did it? I restricted, but I ate food that the patients with a more common eating disorder wouldn’t. So I continued on with my life as the girl who was broken but didn’t know why. The girl who was never enough. The girl who was just “picky.” I was the girl who chose to isolate herself from her peers, her family and her culture. I was the weird girl at school who would eat the same thing every single day and sometimes not at all. I was the girl who didn’t have an eating disorder. But now we know better.

We know better now. We need to DO better now. We need to start a conversation especially with our healthcare providers. I truly believe that most of them do not mean us harm or ill will. They took an oath to care for others in their most desperate hour to the best of their ability and knowledge. We should NOT be fighting them; we should be fighting WITH them. I have come up with some guidelines that I hope will help you or a loved one in their journey battling an eating disorder.

Knowledge is power.
I’ve seen this phrase posted around many of my teachers’ classrooms growing up and it is so much more important than I first understood. Educating others about eating disorders and the specific diagnoses that are out there is so important to the healing of this community and those who are affected by it. Talking to your doctor about your specific needs helps them better care for you. We know this because their knowledge of our family’s medical history can guide them when screening us for certain illnesses that are linked to genetics. Some of my healthcare providers that I have had since before my knowledge of my ARFID diagnosis have since learned about my specific eating disorder and have continued on to helping other patients identifying their own eating disorder, ARFID or otherwise. Those healthcare professionals asked questions, listened and went on to continue learning about a mental health disorder that affected one of their patients in order to better care for them. That is a true hero.

Be honest when they trigger you.
If they cross a line, say something. You can’t tip toe around it. I know this might sound really confrontational to some of you and I promise it is not nearly as mean and scary as it sounds. Earlier we talked about a phrase I unfortunately hear too often that is triggering to a lot of individuals who struggle with an eating disorder. I know that some people might ask questions or make comments in an effort to comfort us or make us feel better but it backfires and sends us into a spiral of questions until we are in a vortex of self-loathing. From personal experience, speaking up and explaining that what they said was hurtful almost guarantees that they will never say it again; to you or anyone else. Just like some of us listened to our parents when they said not to put metal objects into the electrical outlets, others needed to learn from an unfortunate mistake.

Be Kind.
Remember, we are all human. We are all out here in this world doing our best. Everyone struggles with something. When someone is willing to listen to you, speak with kind words from a place of love and you’ll be able to see each other eye to eye soon enough.


Cassie Cando is a sun-loving photographer who has a passion for collaborating with other creatives to empower others. Cassie shares, “My family is my life and I am the kind of person who considers good friends a part of my family. Oh, and I’ve had an eating disorder for almost all of my life. It’s called Avoidant Restrictive Food Intake Disorder, but I am stronger than it.”